Source: Facebook group comment
Some with MCAS can have symptoms of a UTI with no bacteria in the urine. If that is the case, no antibiotics would be needed, but rather increase antihistamines because an MCAS flare can cause interstitial cystitis which can mimic symptoms of a UTI.
Did you have a positive culture with culture and sensitivity? If so, I still don’t recommend Cipro if you may be hyper flexible or have EDS because it is contraindicated for people with EDS. And many people who have MCAS also have EDS even if it hasn’t been diagnosed yet.
There is a big difference between a urine dip and a urine culture. I have had a dip come back positive, and the culture come back negative. That is usually due to either natural flora or contamination of the sample being present but not an actual infection.
Also, it is the urine culture is what they use to test which antibiotics will work for your specific infection. That’s why it is called a culture & sensitivity. First they see what specific organisms grow - and then they test to see which antibiotics the culture is sensitive to - or which antibiotics kill the infection.
So, first, I would wait for a culture and sensitivity and second I would ask if there are other options. I had urgent care visits that diagnosed UTI 3 times and was prescribed antibiotics only to get called back to say there was no infection.
The information about MCAS flares causing interstitial cystitis that mimicked UTI’s came from a MCAS informed urologist that I was referred to. He is the one who told me to treat the UTI symptoms as an MCAS flare and increase antihistamines. I have had to do that 3 times since then and the urinary symptoms went away every time.
Assuming they ordered a culture and sensitivity- unless you are having a fever - I would wait for the results. That will tell if you need antibiotics and what other antibiotics you could take. Of course, it is up to you. In the mean time, I would be drinking water 8-16 ounces per hour while awake and take Vitamin C and Cranberry 3-4 times a day - if you tolerate those - and take an extra dose of extend release antihistamines. And Zinc twice a day. I take my additional dose 6-8 hours after my morning dose. Doing those things will be treating it as if it is at the beginning of an infection and trying to make an inhospitable environment for bacteria AND treating it as an MCAS flare. Hopefully one of those may help you not need the antibiotics. Again, it’s your body. You know what you are feeling. But I would at the very least ask for a different antibiotic that is not in the fluoroquinolones family.